Tuesday, October 19, 2010

Dream Big

If no news is good news, I guess you can assume we’ve been living a whole lotta good news over here.

The last few months have been a breath-holding, too-good-to-be true, waiting-for-the-other-shoe to drop (but-it-didn’t) exercise in trust. Trust that the doctors did exactly what they said they did. Trust that the repairs would hold. Trust that Mac’s body would handle the changes well. Trust that we would be able to tell if anything was going wrong. Exercising that kind of trust can leave you exhausted.

But yesterday, we received confirmation --confirmation that everything is going as well for McKay on the inside as it appears to be going on the outside. The docs directed us to stop all of McKay’s post-surgery meds one week ago. They wanted to evaluate him on his own merits – no assists, no intervention. And our drugless little wonder could not have been better. Aside from a liver that seems slightly enlarged due to a change in pressures from his new plumbing, McKay received a clean bill of health yesterday.

After the exam, x-rays, and tests we did something the doctors have never done with us before-- we conferenced about the coming years, not months. We talked about the importance of social development instead of prescribed isolation. We talked about the possibility of him going years, even decades without another surgery. We even talked about signing him up for the four-year-old soccer league when the time is right. I never let myself plan, dream, or envision anything that far ahead before yesterday. Permission to dream for yourself is empowering, permission to dream for your child is transforming. It's a concept to which I'm still happily adjusting.

We're not completely out of the woods yet. Mac still has a way to go before he’s up to par developmentally. He still has no real, recognizable words. We give him generous credit for nie, nie when he wants to get into bed and I thrill each time I request a kiss and he delivers, but it's a long way from effective communication. A speech therapist now visits us three times a month and we’re working on some simple signs and animal sounds. The progress is slow, but there is progress. Just this week he has started to make a "mmm" sound when he sees a cow, seemingly trying to spit out some semblance of "moo." Progress.

Some have told me to expect a month of developmental delay for every minute they shut McKay’s system down entirely – every minute he was technically “gone.” For McKay that time totaled 29 minutes, 29 months. The child is only 26 months old. So technically, I guess we could say he’s doing better than expected. I really don’t know what to think, I only know how to feel. And I feel grateful.

I am so thankful it overwhelms me, stops me, and causes me to see everything in life in new and glorious ways. Everything. I've been given the chance to dream, to hope, to imagine futures for all of my children. All of them. And you know what they say – if you’re going to dream, dream big. Watch out big, wide world. Mac is here to stay.

Incredible. Simply incredible. You give me so much hope for a complications free Fontan. So much of our lives are devoted to the what ifs related to that surgery and seeing McKay fly through without constant return trips for effusions and chylo makes me realize that it really can happen! McKay, you are amazing. I can't wait to see him make all of the progress you are waiting for and see him scoring some big goals in the soccer league!

Yay! It was fun to see a new post from you. I am so glad to see Mac thriving and doing so well. What a sweet little boy you have there. It was nice to talk with you the other day, I appreciate your positive thoughts and wise words! It is really nice to have someone that gets what we are going through (In a different sort of way :))!

Mindi, What an amazing sweet blog. I've cried tears of complete sadness and tears of joy. What an inspiration your family is. I am so thankful that I have been able to know and love you. I've learned from you from the moment I meant you. Thanks for being a part of my life. I miss watching you and your cute family. Know that even though we might not be close in miles we feel close in our hearts. Know our prayers are with you. XOXO Deana

Live. Laugh. Love.

About McKay

Mr. McKay is a miracle. He was diagnosed with a soup of congenital heart defects while still in utero including: double inlet left ventricle (DILV), Transposition of the Great Arteries (TGA), a large ASD which has now been modified to create a single atrium, pulmonary atresia, and dextrocardia. He has undergone a series of three open heart surgeries to reroute his plumbing into a flow more likely to meet his growing body's demand for oxygen. He is post BT Shunt (August 22, 2008) and post-Glenn (November 25, 2008), and most recently traveled cross country to have the Fontan procedure at the Children's Hospital of Philadelphia (July 9, 2010). Today, McKay is a growing near-three-year old challenged with developmental hurdles we are anxiously trying to help him overcome. McKay offers heart baby hope of the most robust proportions. This blog chronicles our adventures.